Current Community Living Issues

The Waiting List for Waiver Services is Changing

Since its inception, access to home and community based waiver services in Louisiana has been first-come, first-served. With close to 16,000 people with developmental disabilities on the waiting list, with a wait time of over ten years, this process has not served Louisiana’s citizens with DD well. Fortunately, after several years of planning with stakeholders, the Office for Citizens with Developmental Disabilities (OCDD) is prioritizing the people on the waiting list according to the urgency of their needs. After completing a screening on each person, individuals with developmental disabilities will be divided into categories with those in the most emergent need served first. People will be re-screened on a regular basis and can request a re-screening if their needs change.

Advocating for additional waiver slots has been an ongoing initiative for the Council since the waiver’s inception over twenty years ago and will continue until all those needing supports to live at home in the community receive those supports. The Council participated in the planning for the prioritization and is pleased that people in the most emergent situations will have their needs met first, enabling them to remain at home and connected to their communities.

Community and Family Support

UNEQUAL ACCESS TO COMMUNITY AND FAMILY SUPPORTS (ACT 378)

Act 378 of 1989 called for a system of community and family supports to be available for families of children and adults with disabilities in their own homes based on their individual needs in order to avoid out-of-home placement. The Act directed the Louisiana Developmental Disabilities Council (the Council) to develop a plan for this system based on guiding principles included in the law and directed the state to adhere to these principles in program planning, development, funding, and implementation. Act 378 called for the Council to monitor implementation of the Community and Family Support System Plan, which it continues to do today.

The Community and Family Support System has been extremely successful in keeping people with disabilities in their own homes and communities through the provision of cost-effective, individualized, and flexible supports; and consumer satisfaction has remained high for those who receive services. However, the shift from a centralized community support system to one administered by the ten human services districts/authorities or local governing entities, has resulted in some unintended consequences. What Act 378 created as a statewide program with equal access, has, in some respects, become ten programs providing varying degrees of access depending on where one lives in the state.

Recognizing this inequity, the Council formed a Community and Family Support System Task Force to develop recommendations for Governor John Bel Edwards, LA Department of Health Secretary Dr. Rebekah Gee, legislators, and others to address funding and other issues preventing the system from meeting the needs of Louisiana’s citizens with disabilities and their families. In the 2017 legislative session, the Council, and its grassroots advocacy network LaCAN, successfully advocated for one of the key recommendations. Act 73 of 2017 requires an amount equal to nine percent of the state general funds each human services district/authority receives be dedicated to Act 378 services for people with developmental disabilities. While this was a monumental step in the right direction, the full issue of unequal access to services will not be solved until the disparity in state funding per capita among the districts/authorities is addressed by the legislature and administration.

In addition to establishing the mandatory minimum, Act 73 increased the representation of developmental disabilities on the boards of the human services districts/authorities.

New Home and Community Based Services Rule

The Centers for Medicare and Medicaid Services (CMS) issued a new Federal rule to ensure individuals receiving Home and Community-Based Services have full access to the benefits of community living and are offered services in the most integrated settings. As part of the Affordable Care Act, the rule is designed to improve the quality of services for individuals receiving Home and Community-Based Services (HCBS).

The rule defines and describes the requirements for where HCBS can be delivered (both where people live and where they receive services during the day) and adds new person-centered planning requirements. Louisiana must evaluate where services are currently being delivered (settings) in its waivers and Medicaid State plan programs. If there are settings that do not meet the new home and community-based settings requirements, the Louisiana Department of Health will have to develop a plan – with input from the public – to bring their programs into compliance. The state has until March 2020 to transition any setting not in compliance with the new rule.

The Office for Citizens with Developmental Disabilities (OCDD) has developed a plan to evaluate HCBS settings within the New Opportunities Waiver, Children’s Choice Waiver, Supports Waiver, and Residential Options Waiver, to assure that the requirements of the rule are being met and to allow the public an opportunity to provide input on the transition plan. The plan can be reviewed here. The Office of Aging and Adult Services (OAAS) and the Office of Behavioral Health (OBH) have also developed plans to ensure its HCBS are delivered in places that meet the new requirements. Review the OAAS plan and submit comments here. Review the OBH plan here.

Institutionalization vs. Home and Community-Based Services

Between 2005 and 2012 Louisiana decreased the number of large publicly operated developmental centers (ICFs/DD) from nine to one, with Pinecrest the only remaining center open. The Council continues to advocate for the downsizing and eventual closure of this center as we also advocate for the capacity of the community provider system to increase to serve individuals with challenging medical and behavioral needs.

Unfortunately there has not been similar progress in the downsizing and closure of private, residential facilities (large and small ICFs/DD). In fact, Louisiana leads the nation in the number of people per capita in all ICFs/DD. There are people living in 24 hour facilities who do not need 24 hour supports. Resources being spent on residential facilities could be used to support these individuals with waiver services and the cost savings could serve others on the waiting list. It is long overdue for the state to begin moving these residents into their own homes in the community where they will have more opportunities to gain greater independence, develop relationships, and exercise self-determination in their lives.

The average cost to serve an individual in Pinecrest: $263,000

The average cost to serve an individual in a private ICF/DD (large or small): $63,290

The average cost to serve an individual through a waiver (across all 4 DD waivers) is: $31,000